Ask the Expert: Taking Care of the Caregiver

Being a caregiver of a loved one with a brain tumour is no easy feat. Many caregivers experience challenges, emotions and life situations that are new to them. It is critical that caregivers take care of themselves. Below are some suggestions for the caregiver to do just that.

1. Ask for help – “Realize that sometimes it’s ok to ask for help from others around” - anonymous caregiver of a brain tumour patient

Trying to do all the caregiver responsibilities on your own will undoubtedly end in burnout. Reach out for support around you; even the best and most loving caregivers need help from others. Family members, friends, health care professionals, volunteers and respite services are all available choices for help. Be realistic and honest with yourself about how much time you can give, and then communicate this with your support system. Accept help from others when it is offered to you.


2. Acknowledge and accept your feelings

As a caregiver you may experience many feelings that are new and difficult. Frustration, anger, depression, fear, guilt, resentment, worry and feeling overwhelmed are all normal and common emotions experienced by caregivers. Accept and allow yourself to feel the way that you are, as long as it does not compromise the well-being of the one being cared for.


3. Talk about your feelings – “It’s really important to find and have your own support system, like friends and/or family, who you feel comfortable to talk openly about your feelings and emotions...or vent when necessary!”- anonymous caregiver of a brain tumour patient

Confide in others about the feelings, challenges and successes you experience being a caregiver. Don’t keep your emotions bottled up; talk with at least one other person. Find a local caregiver support network, speak with trusted family members and/or friends, consider seeing a counselor or therapist. You can also go to any of the Brain Tumour Support Groups located across Canada. For more information, explore Brain Tumour Foundation of Canada’s support services or contact our support services team at 1-800-265-5106.


4. Knowledge is power

Learn as much as you can about the effects, treatment and needs of your loved one’s brain tumour and gain information about being a caregiver. The more you know, the more effective you will be in caring for your loved one and the more satisfied you will be about the quality job you have completed. Speak with your health care team, other caregivers and read informative books. You can also order the Brain Tumour Foundation of Canada Patient Handbook for pediatrics and adults.

5. Take time for yourself –“Don't feel guilty for taking time for yourself! I know for me it took awhile to realize I was actually being a better caregiver when I still take ‘me’ time” - anonymous caregiver of a brain tumour patient

When you are a caregiver it’s very important to take time for yourself. You owe it to yourself for the great care you provide to your loved one. Take short breaks often, take longer breaks or mini-vacations and do something that rewards your hard work and effort. When you do take breaks, try to stay away and not engage in activities related to your caregiver role. Without these breaks you may not have the emotional or physical strength to handle the extra stress or demands you experience.

6. Take care of your physical health

Eat healthy, exercise regularly, rest and relax. Caregivers often experience extra pressure and stress. Taking care of your physical health will ensure you have the energy to care for your loved one. Maintain your regular health check-ups and see your doctor if you are experiencing physical or emotional difficulties.


7. Recognize the signs of caregiver burnout

As a caregiver, if you experience “burnout” it is no longer a healthy or productive situation for you or the care receiver. Here are some warning signs that you may be experiencing caregiver burnout:

  • Physical or emotional harmful behaviour towards care receiver (seek help immediately)
  • Lack of energy, always seem to be tired even after naps or breaks
  • Sudden mood changes or swings, easily angered, increasingly impatient and irritable, frequent crying, deep sadness or depression
  • Loss of interest in activities and/or people that you previously enjoyed
  • Sudden or large changes in eating habits, sleeping, work performance
  • Often feel physical symptoms such as headaches, stomach aches that don’t seem to ever go away 


Thank you to Josh Peters, MSW, RSW, for compiling this very important information for all caregivers of patients with a brain tumour.

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